Two people meet, fall in love, get married, and buy a cute little house with a white picket fence. One day they decide they are ready to start a family: one boy, one girl, and a dog. It might sound cliché, but that’s what Stacy and I both wanted. That was our dream. Unfortunately, it didn’t quite work out that way, which is why this post is titled “Starting a Family: Take 2”.
Our first attempt of starting a family, “Take 1”, ended in tragedy. If you’ve read Our Story, then you already know about the emotional roller coaster that we went through before losing our first son. But if you haven’t read it yet, let me fill you in:
The First Pregnancy
When Stacy got pregnant in 2008, we were hit with all of the emotions that I think all first-time parents-to-be go through. We were happy and excited because we were finally starting a family. We were also nervous because we were going to be responsible for this little life. Is it going to be a boy or a girl? Do we want to find out the sex of our baby or do we want to be surprised? Would we be good parents?
The first few gynecology appointments were uneventful. The usual tests and checks… “yep your pregnant, congratulations!” Then things took an unexpected turn. We were asked if we wanted to do a chromosome screening. Stacy was an early childhood special needs teacher, so we decided to have the test. Not that it would change anything, but just to see if everything was okay. When the test came back, it indicated that Stacy was at a high risk for having a child with a chromosome abnormality. So we were going to have a child with Down syndrome? Not exactly. Our next option was to have an amniocentesis for further testing. We were warned of the risks because this procedure involved using a long needle to remove amniotic fluid from the uterus. Amniotic fluid is the fluid that surrounds and protects the baby during pregnancy. It contains fetal cells and various proteins.
The amniocentesis was performed on November 5th and we had the devastating results on November 7th. Our son, who we had already named Jackson, was diagnosed with Trisomy 18. Unlike Down syndrome, which is Trisomy 21, the outlook for babies with Trisomy 18 are grim. The statistics vary, but they estimate that 95% of the babies that have this syndrome do not make it through the pregnancy. Of those that do make it, only 10% live to celebrate their 1st birthday. If you want to learn more about Trisomy 18, please check out Trisomy18.org.
So there we were, expecting our first child, only to have the world come crashing down around us. What were we supposed to do? How did this happen? Why us? Why Jackson? What did we…what did he…do to deserve this? So many questions, but not many answers. We learned that that there was nothing we did to cause this, and that there was nothing we could have done to prevent it. We were given the option to continue with the pregnancy or to terminate. How were we supposed to make that decision?
The gynecologist’s office referred us to another practice that specialized in high-risk pregnancies. They had a higher resolution ultrasound that could provide a better image of Jackson. That ultrasound showed a severely twisted spine and what looked like a hole in his heart. I think at that point we knew what we needed to do, and it was not a decision we took lightly. We didn’t want to say goodbye to our first child. How do you say goodbye to someone who you’ve never met? We would never get a chance to hold him or see what he looks like.
We couldn’t stand the thought of him suffering which is why we made the decision we did. I know there are people that are going to read this that will view us as bad people for terminating a pregnancy. But unless you’ve been in our shoes, please don’t judge us. You have no idea how hard this decision was for us.
Before we said our final goodbyes, we went to visit the graves of our late relatives to tell them that Jackson will be arriving in heaven soon and to please take care of him until we get there. We didn’t want him to be up there alone. On November 17th, 2008 Jackson was fitted with his wings. His ashes are in a small urn in our living room.
Take 2
Now that we are all caught up, let’s move on to our second attempt at starting a family. Shortly after we lost Jackson, Stacy made a comment about how much she enjoyed being pregnant. And I enjoyed seeing her pregnant. I don’t know what it is, but a pregnant woman has this glow about her. I can’t describe it.
We wanted so badly to start a family, but we obviously didn’t want to go through what we went through with Jackson. We talked with the OB/GYN and she assured us that getting pregnant again would not be a problem and what happened to Jackson was an anomaly.
Roughly five weeks after we said goodbye to Jackson Stacy was pregnant again. Oh crap! We started to get flooded with conflicting emotions. We were excited because we got a second chance to start a family, but we were also nervous as hell! We decided to wait until after the chromosome screening results came back before we told anybody. We couldn’t do the screening until the fetus was at least eleven weeks along, so we waited, we prayed, we held our breath, and we waited some more.
The holidays had been a bit emotional after our loss, so we took a road trip down to Tennessee to get away for a few days and clear our heads. Nashville, Tennessee was always our favorite vacation spot, but instead of just doing Nashville, we decided to road trip to Memphis, Nashville, and Knoxville before heading back home. Just to be sure Stacy was pregnant, she took a pregnancy test in all three of those cities:
Memphis:
Nashville:
Knoxville:
Well, unless all three of those pregnancy tests were faulty, I think it was safe to say that Stacy was pregnant.
On a couple of our previous trips to Nashville, Stacy and I had gotten tattoos at Billy Joe’s on the corner of Broadway and 3rd in downtown Nashville. We thought it would be nice to get a couple of memorial tattoos for Jackson while we were there. Mine is on my chest; Stacy’s is on her wrist. The light blue ribbon is for Trisomy 18 awareness.
When we got back from our road trip, Stacy called the OB/GYN’s office to make an appointment. She nervously went to all of the prenatal appointments, anxiously waiting to take the chromosome screening. Fortunately, this time the screening came back normal. Ultrasounds looked normal. It looks like we are going to have a healthy baby boy! Stacy and I simultaneously let out the biggest sigh of relief! Do you have any idea how hard it is to hold your breath for almost 5 months? On April 15, 2009 we finally broke the news to the world that Stacy was pregnant again. Okay, maybe not the entire world. Just our family and friends.
Coming up with a name was a bit of a challenge. Stacy always wanted Jackson for a boy and if it was a girl, it would be Madison. Well, since we already used Jackson for our first son, we didn’t think it was right to use reuse it for our second son. We decided to use Jackson for our second son’s middle name. Okay, so what will his first name be? It had to be something that sounded good with Jackson. Fill in the blank: ___________ Jackson. We spent some time throwing names around and finally settled on James. James Jackson had a nice sound to it.
Here is Stacy at 20 weeks pregnant:
This pregnancy seemed normal. There weren’t any issues with any of the baby doc appointments, other than James not cooperating with the ultrasound tech. She kept trying to get him to move into a certain position, but he just wanted to lay there. She was eventually able to manipulate him enough to get the ultrasound pics and measurements that she wanted. She didn’t seem overly concerned with his lack of movement, so neither were we. We had never been through a normal pregnancy, so we didn’t know what was normal and what wasn’t. And because James’ chromosome screening was normal, and all of his ultrasound measurements (when she could get them) were normal, we had no reason to be concerned. In hindsight, maybe we should have been.
Fast forward a bit to the night of August 28th and our world was about to come crashing down on us once again. It was a typical Friday night. I got home from work, sat down for dinner at the dining room table, and was looking forward to relaxing. Halfway through dinner, Stacy’s water broke. She quickly ran to the bathroom, trying not to get amniotic fluid all over the carpet. As she was cleaning herself up, she noticed what appeared to be meconium in the amniotic fluid. For those of you that don’t know, meconium is a baby’s first bowel movement. This usually happens after the baby is born. If the baby has his (or her) first bowel movement within the womb, however, there is the potential for it to get into lungs which can cause serious breathing problems.
Stacy wrapped herself in a towel around her waist so as not to get any amniotic fluid on the leather seats of the Mustang and we made the 30-minute drive to the hospital. As we were walking into the Emergency Room, Stacy still wrapped in the towel, a woman was walking out and said “congratulations!” I guess a woman waddling into the ER with a towel around her waist is a sign that she’s about to have a baby.
After we checked in, we were taken to a room on the Labor and Delivery floor. A nurse did her routine checks on mom and baby and she showed some concern about James. She thought he might be in distress, so she decided to try to attach a fetal heart monitor to James’ head through Stacy’s cervix. At this point the nurse was growing more concerned. Although James did have a heartbeat, he didn’t move when she scratched his head. The nurse put a call into the obstetrician on call and they whisked us away for an emergency c-section.
At approximately 12:30 am on August 29th, James made his entrance into the world. But something wasn’t right. I have seen enough movies and medical shows to know that a baby normally cries shortly after being born. We waited for the cry, but it never came. Why isn’t he crying? Is James okay?
He was alive, but something just wasn’t right. After we were briefly introduced to James, they rushed him to the neonatal intensive care unit (NICU) for further evaluation and testing. Stacy was sewn up and moved to recovery for a couple of hours. Then we went up to the hospital room to get a couple of hours of sleep. As much as we wanted to see James, Stacy was exhausted. She told me that I could go down and see him if I wanted to, but I wanted to go see him together. We told the nursing staff to wake us up if there was any news about James.
We weren’t woken up with any news about James so around 5 am we got up, called our parents to let them know what was happening, and got ready to go see James. A nurse escorted down to the NICU where we would finally meet James for the first time. It was a long walk, made even longer by the anticipation of finding out what was wrong with James. We were hoping for the best but trying to prepare for the worst. After what we went through during our first pregnancy, it couldn’t be that bad…or could it?
Once we arrived at the NICU, we were given the guidelines on how the NICU operates. We needed to sign in and be buzzed into the NICU. Only two people can be with the baby at any time, and one of those people needed to be a parent.
After going over the rules, we were led to the “pod” where James was. I don’t know if all NICUs are like this, but this NICU had several rooms, or pods as they called them. Each of these pods were large enough to accommodate eight babies and all the required medical equipment. Once we arrived at James’ pod, we were greeted by one of the nurses stationed in that pod who took us over to meet James. At this point she didn’t have much to share about James other than he doesn’t have a suck/swallow reflex and the resident NICU doctor was going to consult with neurology and other specialists to try and figure out what was wrong with James and what their recommendations are.
Because James is unable to suck or swallow, he is not able to eat by mouth, so they inserted a feeding tube in his nose so he is able to get formula and/or breast milk that way. I have written up an article about the various types of tube feeding which can be found here.
In addition to not being able to eat by mouth, James requires frequent suctioning of his nose and mouth to remove secretions and keep his airways clear. Because he lacks the ability to suck or swallow, he is unable to manage his secretions like a normal person can.
Seeing James in that tiny hospital bed, hooked up to machines that continually measure his vital stats and with a tube in his nose was not the outcome we envisioned during the pregnancy. We were still emotionally scarred from the loss of Jackson less than a year ago. And now this. What did we do to deserve this? More importantly, what did James do to deserve this? Looking around the pod at the other babies and their families, what did any of us do to deserve this?
The pregnancy was uneventful. We went to all of the prenatal appointments and everything seemed normal. We don’t know what happens next. We will talk with the doctors to see what their thoughts are and where we go from here.
I suppose by now you want to see some pictures of James, don’t you? Well, if you’ve read all of this, I guess you deserve a couple of pics, so here ya go…